Feeling Alone With ME/CFS, Fibromyalgia Or POTS ? Why Finding A Connection Matters – A Tribute To A Leader Of The Community



By Michael Cuthbert in ProHealth.


It was about 4 years into severe illness, when pain had become more than just an issue during flare ups – it had become a daily occurrence.

What was causing all these symptoms?

Just when I had found a way to adjust to a new normal, a new symptom would pop up or the symptoms would worsen to once again make my life seem unbearable.

For years I had hopped from doctor to doctor asking about this flu-like illness that simply wouldn’t go away. No one gave me any answers that made sense. Something was wrong—what was it?

I felt so alone in the world. My life was reduced to existing and surviving. Nobody understood what I was going through, not even those closest to me.

My illness had become like a dark secret. Most people didn’t even know what I was going through. I chose not to tell most people, because I had no real answer for why I was sick or what was wrong with me. So most strangers and acquaintances didn’t have a clue, and given that I often looked well, it wasn’t hard to hide as long as I kept my appearances to short times during better days.

With friends, there was little point in talking about it. While there was genuine concern and caring at first, the conversation soon sounded like a broken record. They had no answers for me anyway, and as my suffering deepened, it became clear that they had no idea what I was really going through. Inevitably, when I had not spoken to them in a while, or the topic of the illness had not come up for some time, they treated me like a normal person and often showed no understanding or concessions for my misdemeanours such as cancelling at the last moment or being late.


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